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Why I Cried When the Latest in a Long Line of Pain Doctors Spoke

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I have lived with myalgic encephalomyelitis/chronic fatigue syndrom (ME/CFS) and fibromyalgia for many years now, so I am no stranger to constant pain. But my beautiful, loving sister has complex regional pain syndrome. CRPS is a little-understood syndrome involving the neurological system that causes its victim to suffer constant very severe pain — every second of every day. Nicknamed “the suicide disease,” this unrelenting syndrome leaves people rolled up in pain, unable to engage in their normal activities… wondering where their lives have gone.

My sister has had CRPS for nine years now. Neither of us – both of whom were paramedics for many years – had ever even heard of it when she was diagnosed. Neither had most medical providers. The treatments for this severe disease have been severe themselves – sometimes seeming outlandish. At least she was able to find doctors near her home in California at the time.

A few years ago, we both moved to another state, and she began the hunt for both primary care and pain management doctors who knew about, and understood, CRPS. It turned out that was just preposterous. The first pain doctor she went to assured her he knew all about CRPS, and that he had several patients with the disease. It quickly became evident that he didn’t know the first thing about the syndrome, his deception showing in the questions he asked – those he didn’t ask, and the lack
of cohesive treatment.

Although she was afraid of being labeled a “doctor-shopper,” my sister found a pain management clinic some 30 miles away, and began seeing the doctor – or more accurately his physician assistants – there. He seemed to have at least some understanding of CRPS. At least she thought he did.

For the past three years I have watched her being systematically abused by these people who operate their clinic in a strip mall, herding so many people through daily that there are actually patients sitting on the floors in the hallways. Yet my sister’s fear of being labeled kept her telling herself it’s not their fault they can’t treat her effectively.

In the face of what has been deemed the opioid crisis, these people cut back her pain medication suddenly and drastically, without tapering, telling her that “it’s the new law” that prevents them from prescribing that level of pain medication. They have also told her that the “new law” only allows their office to prescribe a set amount of opioids per month, regardless of how many patients they have, so they have to cut some people back. What?

I assured her that’s not true – going so far as to call our state health department and other agencies, all of which assured me that the FDA’s guideline was just that – a guideline. There is no new law. So many chronic pain warriors are going through this deception.

One day last week, that pain clinic went too far – I simply couldn’t watch her suffer at their hands any longer. They had left her feeling helpless… and hopeless. She, yet again, spoke of suicide. If you’ve crossed this road, you know that’s a tenuous thread that may eventually break. Fear gripped my heart.

I searched for a pain management doctor closer to our homes, and made an appointment for her with one that stood out to me – I don’t even know why.

Yesterday I loaded my sister up in my car and drove her to that appointment. I tackled the enormous new patient paperwork packet because she can’t hold a pen in either hand anymore. I tried not to be distracted by the fact that she was rocking back and forth in her chair, and seemed to be shaking all over with her pain. You know that look – the drawn expression, tightness around the mouth and forehead, the pale skin, and distant eyes. Yet when the questionnaire asked her to rate her pain in that moment, she thought about it for several seconds… then she quietly said, “About a 6.”

I was stunned, and asked her, “Are you sure?” She replied, “I’ve had a lot of really bad pain in my life.”

She was taking the pain scale at face value — with 0 being no pain at all, and 10 being the worst pain you’ve had in your life. Many pain warriors adjust their answers to the pain scale question to take into account the severity of their actual pain level in the moment, making it something the medical provider can understand. For the sake of being honest, she wasn’t doing that.

We were taken back to an exam room, where I noticed that her shaking had turned almost into shivering. She was in so much pain that I just wanted to crawl out of my skin to help her. Of course we were both a bit nervous to see what this doctor would turn out to be — would he even know what CRPS is?

The door opened, and a young, confident man walked in and introduced himself to us both, then sat down. The next words out of his mouth were “So, CRPS huh? That’s not good.”

Then he began to ask all the right questions.

As he focused on my sister and her illness, taking his time to understand everything all the way back to the injury that first slammed her into this world of pain, I choked back tears. He understands! For over an hour he talked with us, making sure he understood all that’s been done up until now, and formulating an action plan that was to begin that very day with an X-ray of the placement of her STIM electrodes.

I cried – not only because this doctor doesn’t believe in simply cutting people off certain medications because of a stigma, but because he understands. Because, as we walked out of his office and headed next door to get that X-ray, my sister had hope for the first time in a very long time.

Why I cried – this time – was in gratitude for an answered, desperate prayer. Prayer for my sister… prayer for guidance in finding a doctor who would treat her like the precious gift she is. I cried in thanks. I cried because I love her.

If someone you love is suffering in pain… suffering at the hands of an unknowledgeable or uncompassionate doctor… don’t give up. It is worth every effort you can make to take on the search for capable care for them. Years of suffering, both physically and emotionally, tend to make you feel like you’re at the bottom of the ocean, surrounded by darkness and incredible pressure. It can become nearly impossible for that person to reach out, to search for the care they deserve.

Photo by Cyd O.

Originally published: October 20, 2018
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